Huntington's Disease hope for cure everyday

[ScottySkis]

HDSA Applauds Energy and Commerce Committee for Highlighting Burden of #HuntingtonsDisease, Reiterates Call to Pass Bipartisan #HDParityAct

Washington, DC (July 29, 2021) – The Huntington’s Disease Society of America (HDSA) applauds the House Energy and Commerce Subcommittee on Health for holding a vitally important hearing today that will spotlight Huntington’s disease (HD) — a rare, inherited, neurodegenerative disease whose patients are uniquely disenfranchised by the current health care system.

READ FULL PRESS RELEASE: https://hdsa.org/news/hdsa-applauds...erates-call-to-pass-bipartisan-hd-parity-act/

#LetsTalkAboutHD #HDSAFamily

 

[ScottySkis]

Great news for Huntington disease patents trails move on to level 3:
"""

Neurocrine Biosciences Announces Completion of Enrollment in Phase 3 KINECT-HD Study Evaluating Valbenazine for Chorea in Huntington Disease

/PRNewswire/ -- Neurocrine Biosciences, Inc. (Nasdaq: NBIX), in collaboration with the Huntington Study Group, today announced the completion of patient...

www.prnewswire.com

"

 

[ScottySkis]

Great news from Huntington New medicine approved by FDA recently to slow down completely stop Huntington progressive:

Gene-silencing Therapy for Huntington's Earns Orphan Drug Designation

The FDA granted orphan drug designation to Vico Therapeutics’ VO659, an investigational gene-silencing therapy for Huntington’s disease.

huntingtonsdiseasenews.com

 

[ScottySkis]

New medicine for Huntington D being accepted for patients to use according to this link below
I plan on ask about it at my NYC appointment on Fri:
KINECT-HD2 is an open-label study of valbenazine for chorea in #HuntingtonsDisease that is currently recruiting participants in the USA & Canada.

Visit HDSA’s HD Trialfinder (hdtrialfinder.org) or the study website: http://KINECT-HD2.org.

#LetsTalkAboutHD #HDSAFamily

 

[ScottySkis]

Tomorrow Huntington disease appointment in NYC at Columbia hospital Huntington clinic use to once a year but since covid they had delayed it about year in half.
I going to ask them about trails and new medicine and getting on them
My aunt is going take me like every year
I looking forward to this
Asking also about medicine that might keep me cooler

 

[ScottySkis]

Huntington disease medicine update: ""After the tominersen flop, Roche is looking at this Huntington’s pact a little differently. The current science says that mammalian adult neurons cannot be replaced, meaning that most R&D for brain diseases tend to focus on slowing disease progress. NeuExcell, however, “may have unlocked the method for regenerating neural tissue,” the biotech contends.
It sees its neuroregenerative gene therapy platform as the key to this, building around transcription-factor-based trans-differentiation tech. The platform seeks to reprogram endogenous glial cells like astrocytes, which surround neurons and are often reactive after neurons are injured or die, into functional new neurons."

Roche, hoping to move on from recent failure, pens $190M NeuExcell Huntington's disease pact

Roche, like so many others in the field, has seen major setbacks in trying to hunt new drugs for Huntington’s disease, but it’s brushing off a recent flop and signing up with a ne | Roche, like so many others in the field, has seen major setbacks in trying to hunt new drugs for Huntington’s...

www.fiercebiotech.com

 

[ScottySkis]

Huntington D info, below.
For donations and cures to stop it by research below info from today Friday Facebook HD post:

""We are participating in the action warm heart in the Netherlands.
With this contest we can win a sum of money of up to 10,000 euros and we come a step closer to curing / stopping this terrible disease. So help us and click on the link below and vote for Campaign Team Huntington. Sharing is much appreciated"""

https://www.facebook.com/permalink.php?story_fbid=4342381752516047&id=100002327949479

 

[ScottySkis]

Comfortable temperatures in mid Hudson Valley NY today early November Saturday outside high of 50 degres.
Inside it warm to me sun shining I have AC on. Worst part of fuck HD for me is crazy overheating body

 

[ScottySkis]

My Huntington disease
Reasons for government to please recognized for all us Congress and Senate immediately attention below:
"Dear Kirsten Gillibrand, Congressman Bill Pascrell, Jr., Adam Kinzinger & U.S. Senator Bill Cassidy,

We need you to help the #HuntingtonsDisease community pass #HR2050 #S868. Speak to your colleagues, and act on your promises to make the #HDParityAct your number one policy priority so we can #PassTheHDParityAct.

#LetsTalkAboutHD #HDSAFamily
""

 

[ScottySkis]

"Looks like Novartis is setting up to recruit for Branaplam in clinical trials soon.
A Dose Range Finding Study With Open-Label Extension to Evaluate the Safety of Oral LMI070/Branaplam in Early Manifest Huntington's Disease (VIBRANT-HD)
75 participants only.
Contact: Novartis Pharmaceuticals 1-888-669-6682 novartis.email@novartis.com

ClinicalTrials.gov

www.clinicaltrials.gov

 

[ScottySkis]

Help please by getting word out on Huntington D by:
"PLEASE SHARE!
An Op-Ed by Kirsten Gillibrand Adam Kinzinger Congressman Bill Pascrell, Jr. U.S. Senator Bill Cassidy discussing the #HDParityAct.
To learn more visit https://www.votervoice.net/HDSA/campaigns/85418/respond

Roll Call

Congress must pass the Huntington’s Disease Disability Insurance Access Act - Roll Call

OPINION — Our legislation would remove Medicare and SSDI waiting periods for those who qualify for disability with Huntington’s disease.

www.rollcall.com

Senator Ron Wyden House Speaker Nancy Pelosi Senator Chuck Schumer Congressman Richard Neal #LetsTalkAboutHD #HuntingtonsDisease #HDSAFamily #passthehdparityact"""

 

[ScottySkis]

How Huntington disease does to HD patients in our cells more recently seen by scientists link below

“Seeing” the toxic huntingtin protein in people with HD - HDBuzz - Huntington’s disease research news.

Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

en.hdbuzz.net

 

[ctenidae]

Scotty - sorry to hear about your diagnosis - you don't need us to tell you it sucks.

Did a quick search, and there are a dozen clinical trials currently recruiting for Huntington's:

THIS ONE is a dosing study and very small, but worth a shot depending on your stage and the study requirements.

2, 4, 5, 6, and 7 could be interesting depending on your particular manifestations, too.

I'll keep an eye out for anything coming down the pike. We're kind of focused on preterm birth, early cancer detection, and IBS diagnostics just at the moment, but a lot of clinical and pre-clinical stuff crosses my desk.

 

[ScottySkis]

"PTC Therapeutics released a press release yesterday concerning their new, innovative splicing technology that lowers HTT. The big news about this is their new technology is an oral pill. No lumbar puncture or brain surgery (though I am also excited about Uniqure's study as well. If it works it's worth it!)
Me Been a lot to be hopeful for lately."

Oral Splicing Modifiers that Systemically Lower Huntington Disease Protein Discovered Through PTC Therapeutics' Innovative Splicing Platform | PTC Therapeutics, Inc.

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.

ir.ptcbio.com

 

[ScottySkis]

Huntington D way to let people know about this and other horrible illness end of February:.
"""Support the fight vs #HuntingtonsDisease on #RareDiseaseDay! #RDD2022 takes place on FEB 28 - it's our goal is to turn up the global volume for HD awareness & continue to provide world-class resources to families.

LEARN MORE https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily

 

[ScottySkis]

Good Huntington place to donate$$ to help fight it:
"Hi everyone. If for fundrasing for Scottish "Huntington's Association

If anyone could share this or Donate or both!!!
Would be a great help. Get the awareness out there. The service i am rasing money for is an amazing charity that looks after families with HD. They help with everythifn and also have a service just for children and young carers like myself.
We all know how terrible HD is and we need people to know about it.

My gran had this illness and she fought brilliantly she was my best friend. I love her soo much and miss her every single day. My mum now has it and it breaks my heart she is the sweetest soul in this world. Why oh why.

Anyone with HD in their family has seen it all and does have such a different perspective on life. My view anyway.
Love to you all.


I’m walking 2022km in 2022

I climbed Ben Lomond recently, up the more difficult trail named Tramigan path it was brilliant.
The wind at the summit was crazyyy strong and freezing cold. My friend was terrified of the wind blowing us off but I just loved every minute. My bum almost froze though

If anyone wants to donate my link for just giving page

Jasmine's The BIG Sponsored walking challenge 2022

Help Jasmine Doyle raise money to support Scottish Huntington's Association

www.justgiving.com

Please Share!!!

 

[ScottySkis]

There are over 7,000 different #rarediseases that affect 300 million people worldwide. The majority are not well understood, and most do not have approved treatments.

To #HuntingtonsDisease families, a rare disease is anything but rare. Today, there are approximately 41,000 people with Huntington's disease in the United States and more than 200,000 at-risk of inheriting the gene.

Today is #RareDiseaseDay and our goal is to turn up the global volume for Huntington’s disease awareness and continue to provide world-class HD resources to families across the country.

Click here to support the fight against HD: https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily #RDD2022

 

[ScottySkis]

Good dominations from yesterday rare disease fundraising including Huntington D
THANK YOU!!!!!
More than $14,130 raised on #RareDiseaseDay to support the fight against #HuntingtonsDisease!

Learn More: https://app.donorview.com/Donation/...hB-kLkYWjseDf06mpfko1lNX1nss6XUIuQqNf-f_GaI50

#LetsTalkAboutHD #HDSAFamily #RDD2022

 

[ScottySkis]

Huntington D postive trails going on link below seems good news here below:
'"https://huntingtonsdiseasenews.com/...ks-patients-test-sage-718-cognitive-symptoms/
"

 

[ScottySkis]

Huntington more good trails
Breaking News
PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with #HuntingtonsDisease

FULL RELEASE:

PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with Huntington's Disease | PTC Therapeutics, Inc.

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.

ir.ptcbio.com

#LetsTalkAboutHD #HDSAFamily

PTC Therapeutics Announces Initiation of PIVOT-HD Phase 2 Clinical Trial to Evaluate PTC518 in Patients with Huntington's Disease | PTC Therapeutics, Inc.

The Investor Relations website contains information about PTC Therapeutics, Inc.'s business for stockholders, potential investors, and financial analysts.

ir.ptcbio.com